Connecting Online – A Look Inside a Modern Aphasia Group

Connecting Online – A Look Inside a Modern Aphasia Group

Tactus Therapy blogger Holly Fadie visits Emerson College to find out more about a life-participation model of aphasia group therapy that is connecting stroke survivors with family and friends through technology.

For adults with aphasia, the combination of communication challenges mixed with inexperience with technology may result in missed opportunities to connect with family and friends online. At Emerson College, graduate student clinicians are tackling this challenge. By embracing online communication as an opportunity to improve the lives of clients with aphasia, clinicians are helping stroke survivors to re-join the two-thirds of adults who use online social networks.

Last year, the Robbins Speech, Language and Hearing Center pioneered a new kind of language therapy group for patients with aphasia called Connecting Online. It is the brainchild of speech-language pathologist Jena Castro-Casbon, MS, CCC-SLP. Ms. Castro-Casbon says the group was born out of a need to “bridge the gap between what people with aphasia wanted to do online and what they could do.”

Not only do clients with aphasia want to connect online – they need to. She argues:

“Many of the clients I work with live alone and have communication impairments, and often physical disabilities, that limit their ability to get together with family and friends. The ability to engage with friends and family via the Internet helps fight social isolation and can lead to the deepening or, at a minimum, the continuity of relationships that might otherwise not be possible.”

In fact, research suggests that social networks, offering social support and social connectedness, are associated with higher levels of “health, happiness, and longevity.”

Learning Technology in an Aphasia Group

The Connecting Online group consists of five people with aphasia and two speech therapy graduate students. They meet weekly inside a computer lab on the Emerson College campus in the heart of downtown Boston. The group has all the markings of a traditional aphasia group: diverse members, communication goals, homework assignments, speech therapists, and a sense of comradery.

But with the addition of a computer, tablet, or smartphone and an Internet connection, this group offers members something unique: the chance to transcend the group and reach family and friends in real time. The results can be instantly satisfying and bring a great sense of accomplishment.

One member, Steve, wastes no time proudly scrolling through the array of text messages labeled “Family” on his iPhone when given the opportunity to show what he’s been working on.

Steve displays his iPhone with text messages

Another member, Mike, tries to capture the perfect selfie for his Facebook message – a tool that has allowed him to reconnect with high school friends following a traumatic brain injury. He’s even used his tablet’s camera to digitize printed photographs to upload and share old memories with friends.

Mike shares a selfie on Facebook

Ms. Castro-Casbon says the group dynamic has helped members inspire one another to try new things. “While some members are very interested in learning how to use Facebook,” for example, “others were skeptical.” That is until they saw the success others were having. “They became more interested in using Facebook after watching their peers reconnect with old friends and distant family members.”

Building Confidence and Communication

One group member describes his gratitude for the group:

“I am really glad this place is there because I didn’t know how to do Facebook – ever. I’m getting there. Finally I saw people, family, friends – and I talk to them. It’s wonderful. It’s really wonderful for me anyway. I wrote things – funny things. I’m getting there. I’m really fascinated with the whole thing. It’s new for me.“

Another member, Sam, says that he likes being in a group because, “we get to discuss the things we did; and sometimes when I make a mistake, someone is there to help me.”

Sam and Jeff connect online and in person

Not only does the combination of an in-person group and online environment allow improved connectedness, but it can also provide an outlet for expression and confidence building that many people with aphasia might otherwise struggle with.

Enhancing Communication with Technology

Larry Marshall, another member of the Connecting Online group, touts the successes he’s had conveying messages through email, text, and the help of his iPad. He says, “I’m happy because I don’t know how to do these things. All of my friends use it and I don’t use it. And I want to.”

An information technology professional before his stroke, Marshall feels comfortable with technology and says he “loves” using his iPad to help with communication so that “people understand me.” Recalling a time when he struggled with expressing himself over the phone, or when he couldn’t communicate clearly with a store clerk, Mr. Marshall says, “Everyday [with aphasia] is different. With this [iPad], people are more patient with me.”

Larry uses his iPad to communicate better

Because word retrieval and spelling are challenging for Marshall, he keeps a notebook to record key words he can copy onto his iPad later on. On this particular day, he copies “Halloween” onto the iPad keyboard and scrolls diligently through the emoji options in search of the ideal symbol to include in his message. Marshall is the emoji aficionado of the group, setting an example for others of how to use the colorful symbols to expand a message with emotion and context they might not otherwise be able to convey with limited words. ? ? ❤️

Targeting Language Goals

Though Ms. Castro-Casbon cautions that the group could look like a computer skills course initially, the digital domain offers many practical therapeutic applications for improving language. First, clients must generate language – retrieving the words and assembling the phrases needed to send a message or utilize a search engine. All this typing is a prime opportunity to practice spelling as well.

Simply using a social network site or app requires that clients must navigate menus, a skill that requires sustained attention and the ability to follow multi-step directions. For many group members, this also means practicing asking for help along the way. Fortunately, this is supportive environment with two graduate students available to support each member as needed with graphic organizers and aphasia-friendly instructions.

The online medium provides not only opportunities for language enhancement, but also tools for empowering members with information. And from that information comes greater independence.

Flexible, Functional, and Fun

The group took an unexpected departure from traditional communication goals when member Jeff Carlson took an interest in Pinterest. Pinterest is a virtual bulletin board for sharing and organizing ideas. The website helped Mr. Carlson, a former plumber, plan and execute several home improvement projects by allowing him to organize visual supports and directions. He’s been able to print out what he needs and bring it to Home Depot. He then uses the messaging feature within Pinterest to share projects with friends and group members easily.

Mr. Carlson says his next online challenge is improving his ability to send email and text messages, noting, “Texting and emailing are very similar. You have to write a sentence. But with text messages it doesn’t have to be a complete sentence, but you have to learn to text letters like ‘R’ and ‘U.'”

Jena helps Larry with his iPad

These sorts of seemingly small challenges are what keep the group moving forward and evolving. With each new skill the members master, there always seems to be a new goal to tackle. Ms. Castro-Casbon said she never expected to be teaching those now omnipresent emojis, but they have helped members “improve the quality of their messages” and gain more independence.

From simple tasks, such as copying and pasting to uploading a photo, it is clear that little things do add up to big impacts on communication. The Connecting Online group members boast jubilantly about their achievements, their connections with family and friends, and their newfound skills.

Advice for Starting a Connecting Online Aphasia Group

Ms. Castro-Casbon offers this advice to other speech-language pathologists considering starting such a program:

“Do it! Our clients have expressed a high level of satisfaction from participating in the group both during and in-between sessions. Many clients feel like they are becoming more independent online by practicing writing, following directions to complete tasks (like sharing links) and keeping up with friendships and relationships that have suffered due to their aphasia and/or physical limitations.”

She offers these tips to get started:

Be open-minded with what you work on. Initially I thought of the group as working on email and Facebook only. We now have group members working on coming up with keywords for search engines (a difficult task with anomia!), composing text messages, following directions to copy and paste words, and even adding attachments to emails.

Follow the clients’ needs/interests. It seems to work much better to have clients working on individual projects and skills that they are personally motivated to work on.

Talk to students ahead of time about expectations for what clients should be able to do on their own and what types of supports are needed, given their level and type of aphasia.

Technology can be a lifeline for those living with aphasia. As professionals, we must help them learn (or re-learn) to use it so they can stay connected long after our sessions end.

Located on the campus of Emerson College in the heart of Boston, the Robbins Speech, Language and Hearing Center provides a supportive environment where clients and their families learn to overcome a variety of communication disorders and differences. To learn more, visit www.Robbins-Center.com or email Jena_Castro_Casbon@emerson.edu.